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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About Youdah

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    1. Youdah added a post in a topic Need Help-where To Begin?   

      It takes a time of adjustment. Not only with your eating habits, but how you think about food. Start looking for recipes that sound good to you, and make a shopping list. In time, you'll find that your new "diet" is something you enjoy. It doesn't need to be a deprivation, but it can be an exploration of foods and recipes you haven't tried before.

      It sounds like you are already close to a healthy diet, already eating things that you can tolerate. So with a little more adjustment, you will do fine.

      If you've always eaten glutens that you shouldn't be eating, you may not ever have noticed the reactions, because you "always" feel the same. You don't have anything to compare it to. Once you've gone gluten-free for awhile, you may begin to notice how it was affecting you.

      Everyone is a little different, though. You may not notice anything dramatic that is different. BUT, a big difference for your body is that it won't be in a "high alert" immune reaction all the time, trying to deal with things it can't use, or things it interprets as bad for you.

      Try a total abstinence of the things your doctor has shown you. This is the only way you can figure out if you can tolerate them in small quantities. But first, you have to try to go totally gluten-free so you have a "baseline" of how you do without it.

      There are lots of good folks on this forum, WAY more knowledgeable than me on this subject. I'm sure if you take the time to read some of the past discussions, you'll get some good ideas and directions.

      Hang in there. You aren't alone with this challenge.
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    2. Youdah added a post in a topic A Question About Alcohol   

      I would check the ingredients. I've also heard that the gluten molecules are too large to "get through" the distillation process. But, I don't buy it (no pun intended). I've had gluten reactions with grain made alcohols, esp. vodkas. So, I stick to those vodkas made with potato instead of wheat which are usually high-end Polish vodkas. Wines are usually OK for me, and some wine coolers. I've never heard of a beer that isn't made with gluten, otherwise it wouldn't be beer? If I were you, I'd check the websites and ingredients and don't depend on something made with gluten to NOT give you a reaction. Of course, if you are one of those, like me, who knows within an hour when I've had anything with gluten in it, because I get sick, then you can always "taste test" it, and find out the "hard way" which ones you can tolerate. My experiences with gluten demand that I stay as far away from the stuff as I possibly can...don't even like to walk down aisles in the grocery store with lots of gluten products...but that may be going overboard a little? I think you get my point, though. Good luck!
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    3. Youdah added a post in a topic Vancamp's Substitute?   

      VanCamp's may possibly have changed their formula since this thread was begun in 2004. But, everywhere I'd seen on the internet, VanCamp's Pork and Beans in tomato sauce is gluten-free. Well, I don't think so. Possibly gluten is now being put in the "natural flavorings?" Anyway, I've had one heck of a gluten reaction after eating this yesterday. I'm still having problems today, like I always do for 24-48 hours after getting glutened.

      Everything else I ate was all fresh whole foods, so there is no doubt what did it. The VanCamp's Pork and Beans.

      I sure wish these manufacturer's would put on their labels when they've changed a formula, or put the allergy warnings like they should. It would have saved me two days of pure He$$.
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    4. Youdah added a post in a topic Kraft And Quaker Products   

      I was impressed with Kraft when I called them. That page on their website clearly showing what their ingredients mean, just put KRAFT at the top of my shopping list. Thanks for the link!
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    5. Youdah added a post in a topic Kraft And Quaker Products   

      Thanks for that link!

      I have a list that I take to the grocery store of additives and problems with ingredients. I love new lists!
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    6. Youdah added a post in a topic Confused And Upset   

      I'm really new to this, too. I don't have migraines, but I sure can tell when I've been glutened, because all my fibromyalgia symptoms flare up, including the pain and horrible fatigue.

      I'd guess that it's a little different for everyone...but I can feel a "gluten" in about 30 minutes to 2 hours, then sick all the next day...then the day after still feeling lousy, but improving as it gets out of my system. In other words: 1 gluten = 3 days of misery.

      Even when being very careful, you'll still accidentally get some from time to time...a lot of additives and "hidden" glutens go into tons of foods. So eating out, or eating at someone else's house is a high risk thing.

      Make a list of everything you ate, as much as you can remember. You can rule-out foods, and make a list of suspect foods, so you can avoid them in the future.

      I've learned, so far, that the more something is processed, the more likely it is to contain gluten. In addition to telling others that you are gluten-free, tell them that you only eat "organic" foods, and this will help them avoid the hidden glutens for you. Some organic foods contain gluten, but less of them contain than the regular grocery store items, and organic foods are more likely to be labeled as containing gluten if they have any in it.

      Good luck, and it's good to hear that you're doing better!
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    7. Youdah added a post in a topic Are Puffins Cereal gluten-free? And gluten-free Questions.   

      Some say oats are OK, some say it isn't. If you're new to being gluten-free, I'd avoid oats...then when you are well healed and feeling OK, try oats and see if you can handle it. Some can, some can't.
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    8. Youdah added a post in a topic Kraft And Quaker Products   

      According to the Federal Register (4-1-96) 21 CFR, Ch1, Section 184.1444, the FDA requires that all maltodextrin that is manufactured in the USA contain potato, corn or tapioca. No wheat. The kicker is that some companies import their maltodextrin from asia...and asia uses wheat to make maltodextrin. Since the asian maltodextrin is not manufactured in the USA, it can go into foods that are prepared in the USA and still conform to the FDA and so have wheat in it.

      Unless I've recently called the company, I'm avoiding all maltodextrin simply because on a moment's notice, some corporate bean-counter who can get maltodextrin cheaper in asia will change their source, and suddenly you get wheat from something that did not cause problems before.

      I had about 2 tablespoons of Miracle Whip for far so good. I can "feel" the gluten now when I accidentally get it. So, I think it's clear. BUT, the peanut butter I had last night definitely wasn't...and according to the label, it contained only peanuts, sugar and soybean oil.

      I'll check out other kinds of rice cakes. It's amazing to me that I can buy something, like cheese or rice or beans or peanut butter, and they are manufactured to have wheat in them...why would anyone put wheat with a rice cake, or wheat in a cheese product? Absolutely insane!
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    9. Youdah added a post in a topic Non-food Hidden Gluten List   

      here's a list with a lot of additives, including stuff that goes into non-food items. I've found that some things on the list (such as taco shells) do not contain gluten, depending on the brand. So it's always best to call the manufacturer.
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    10. Youdah added a topic in Gluten-Free Foods, Products, Shopping & Medications   

      Kraft And Quaker Products
      I just called Kraft to ask what was in their "modified food starch," specifically for Miracle Whip. According to them, it contains corn, potato or tapioca, but not wheat or gluten. They also said that if any of their products contain gluten, they will list it in parentheses on the label; for example: modified food starch (rye). According to them, if any of the ingredients do NOT show gluten on the label, then it does not contain gluten, because they list any ingredients that are known to cause intolerances or allergies including soy, nuts, eggs, etc. They said that if they use anything with gluten, it is listed on the label. BUT, the product may not meet the FDA's requirements of "gluten free" to put "gluten free" on the label. I guess it's a product by product thing with Kraft.

      I also called Quaker to find out if their rice cakes contained gluten specifically in the ingredients of "caramel coloring," "maltodextrin," and "natural flavoring." They were unable to tell me WHAT these ingredients contained, gluten or otherwise. I have problems with a company who can't tell me what is in their ingredient list. They did say, though, that none of the rice cakes would meet the requirements for a "gluten free" diet, so I think I have to assume the rice cakes contain gluten.

      If anyone has experience, or reactions, to any of these products, please save me a reaction.

      • 11 replies
    11. Youdah added a post in a topic New To gluten-free Diet, Some Advice Needed   

      You are in a similar situation to what I'm in. I've found that gluten definitely causes me problems, but I couldn't get into see the doctor soon enough for a lab test. So, the Catch-22 is: do I need to eat more gluten to prove I shouldn't be eating gluten?

      From all I've read on the internet, by the time you get to your doctor, any labwork will test negative if you've been off gluten for awhile, because that will reduce the amount of antibodies in your bloodstream. There's a high percentage of false negatives anyway; I've seen many on this website have a false negative but a positive biopsy. So, there's no reason that I can see to eat gluten to prove I shouldn't eat gluten! You will have to make your own decision.

      A biopsy is another matter since it takes longer for the gut to heal. But, the prep and the test itself is something I'm not going to put myself through. I've felt lousy long enough; I'm not going to put my body through a scope! Again, that's your choice.

      Ask yourself: is there is any real reason that you NEED the diagnosis? For medical billing, your doctor can put an "unspecified gluten intolerance" which is a side-stop of a full diagnosis from testing. That should be enough to satisfy any insurance company. If you really want a medical confirmation, plan on a biopsy of the small intestine.

      Good luck!
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    12. Youdah added a topic in Celiac Disease - Coping With   

      Other Food Intolerances
      I'm very new to this. Less than 2 weeks without gluten. I kept a food diary to see if food intolerance was causing my fibromyalgia symptoms. As soon as I noticed a relationship to breads and pasta, I discovered on the internet about gluten. For several days, I felt daily improvement in pain, fatigue, and other fibro symptoms. Then it all went south. I started to think I must have been mistaken about the gluten...all in my head, because a gluten free diet wasn't helping me anymore.

      THEN I read more of the posts on this website.

      I realized that I was having a real problem with white rice. Not only did I feel worse, but my blood sugar skyrocketed, disproportionate to the amount of rice that I ate. So, no more white rice for awhile.

      I carefully looked up every ingredient on everything I was eating to make sure there wasn't any hidden gluten. That's a maybe, or maybe not thing, since things like "caramel coloring" are ambiguous.

      Still having symptoms, so yesterday, I avoided all milk products. And, today I'm feeling better again (except the diarrhea that is coming from who-knows-where?) I'm still watching to find out if soy and/or corn is causing any problems.

      I'm also a diabetic. So, it seems my list of things I can't eat is getting fairly long: gluten, dairy, carbohydrates. I'm having trouble getting enough calories, so my weight is taking a tumble, too. (that isn't all bad, but I doubt that it's good to lose 10 pounds in two weeks!)

      I started this thread to try to get, all in one place, the other things that people are having problems with. Additional things to watch out for?

      Is it all down to just fresh meat, fruit, and vegetables?

      So far, for me, it is:
      white rice
      milk or milk products (including cheese)

      This is getting ridiculous!
      • 18 replies
    13. Youdah added a post in a topic New Long Until I Notice A Change?   

      I'm fairly certain that I'm gluten intolerant, but I'm still waiting to talk to my doc about it. When I thought gluten was a problem, I have tried to be gluten free. Every day without gluten, and I felt a little better. Then, I decided that a "little bit" wouldn't hurt me, afterall, I've been eating bread and pasta all my life, and that little bit of Malt Vinegar in the Heinz 57 Sauce wouldn't do anything! Or so I thought. Within 3 hours, I was feeling as bad as I did before I started a gluten-free diet.

      How long does it take? I think it's going to depend on you individually, and I think "how long does it take" is going to be partly dependent upon how successful you (and me) are with eliminating gluten and all those little hidden gluten sources, too.
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    14. Youdah added a post in a topic Exhausted And Sick   

      How long has this been going on? If only for a couple (few) weeks, then the fever could indicate an infection somewhere. It's good that you're doing to the doctor, because it sounds like you need some labwork. Any other symptoms than fatigue and temperature? Sore abdomen? Diarrhea? Painful when you urinate? And so on.
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    15. Youdah added a post in a topic Just Not Sleepy/tired!   

      I am so glad I found this website (with a google search). I'm reading the story of my LIFE! I'm on day 6 de-glutened. The last 48 hours, I've definitely had some of the wired-tiredness. It isn't exactly fatigue, like I've experienced while eating gluten...but certainly feeling tired and unable to slow down enough to sleep or difficulty sitting still to even watch TV. I'll definitely talk to my doctor about it and possible deficiencies, and pump up the vitamins in the meantime.
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